The following stories have been shared by those living with endometriosis, for the benefit of everyone in the endometriosis community. You can read all of these personal stories online here (each story has its own page) or save the print-ready .pdf format. You will need Acrobat Reader 5.0 or better to be able to read them. Feel free to print copies for your personal use, and please respect copyright; kindly seek permission before publishing elsewhere.Personal stories sharing experiences and practical hints can be of immense help to others. Please consider sharing your own valuable endometriosis experiences. You may choose to share just one brief aspect (eg Mirena IUD) and your story can be anonymous. If you are interested in writing your own story, please Contact us.

Caitlin's Story (Thames, March 2011)

Hi, my name is Caitlin, I am fifteen, I live in Thames and I have recently been diagnosed with endometriosis.My pain first started when I was quite young, around 12 years old. I always had lower back pain and had a lot of appointments at the osteopath. I was not aware that this was the beginning of my endometriosis.When I was 14, I started to get really uncomfortable, burning feelings in my stomach. I went to the doctor and he prescribed me antacids (thinking I may have acid reflux as I did not have painful periods at this stage). After a couple of weeks of taking the medication I noticed no change in my pain apart from that it felt lower in my stomach. I had a load of blood tests, but of course nothing showed up. I was also tested for Coeliac disease and to see if I had any allergies.All of a sudden, my periods became irregular and then they completely stopped. I was booked in for an ultrasound at Thames Hospital. It found nothing apart from a 3cm fibroid which was apparently normal. My doctor then decided after about two months of me coming in and out that it was time he referred me on to a paediatrician. I was lucky enough to be able to go through privately which I am extremely grateful for.I went and saw the paediatrician in Hamilton. He asked me a serie of questions about my overall health, he took my weight and height and felt my stomach to see if there were any lumps, he also asked about conditions that ran in my family. Breast cancer and ovarian cancer run in my family as well as auto-immune conditions. It wasn’t until later that I found out my great aunty also had endometriosis. I was prescribed some Imprimine which I was given for the side- effect that it changes your perception of pain. Unfortunately, I was allergic to it so I had to stop taking it.I went back to the paediatrician for the second time because my pain was not getting better. He referred me on to a gynaecologist (also in Hamilton). This was all very frustrating. I was missing a large amount of school-work and I missed out on birthdays and outings with my friends because I was always off school or feeling too sore. It was also hard because I had to travel for a lot of appointments which were all in Hamilton.When I saw the gynaecologist the first thing she talked to me about was endometriosis. Since I had somewhat ‘unusual’ symptoms she wanted me to go on the pill (Microgynon) first to see if that would help me, before doing any operations. I was taking it for about a month and it didn’t help me at all. I went back to the gynaecologist and she booked me in for laparoscopic surgery. Since I was going privately my operation was to be the next Tuesday! I was shocked by how quickly my operation was going to be. I was also very happy to have my operation just so my pain would be better.I had my laparoscopic surgery on 31 August 2010 and was finally diagnosed with stage 2/3 endometriosis. They found it on my pelvic sidewalls, bowel and pouch of Douglas. I had adhesions on my bowel and a lot of scarring which was thought to be from an infection on my appendix. I was so relieved to have a diagnosis. Though it felt like such a long time to get diagnosed, I admire those thousands of women who deal with their pain for time periods as long as 10 years!I have found that having a healthy diet, not eating too much wheat, going for walks and relaxation exercises help a lot to control my endometriosis and pain. I also take vitamins daily including fish oil, vitamin C and magnesium which work miracles!I am very lucky to have a supportive family and friendship group. I sometimes find it hard to get my friends to understand my endometriosis, but once they do they are extremely considerate, caring and understanding.I am planning to complete my level 2 NCEA exams this year and afterwards leave school to do a course in business management as I want to be an events manager.Though endometriosis has changed my life in many ways, I am not restricting myself from having fun! I have been enjoying catching up with my friends again and going out to movies etc... . I am also now a volunteer at Endometriosis Waikato which is really cool. I strongly believe there needs to be more awareness about the condition amongst teens. I am currently organising a group of me and my friends to go up to Hamilton for the Purple Walk for Endometriosis Awareness which I am really excited about (:I will be having my next laparoscopic surgery when I am 19, which is 3 years from now. Until then, I hope that my health will continue to get better and better, and I will be able to go back to dancing which I love.